June 2020 archive

Dear Dan. On Father’s Day

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Father's Day

Dear Dan,

I hate I wasn’t there yesterday to celebrate you. Delaney and I are in New York for surgery and you are in Arizona with Danica and Twix. We’ve been apart for so many ‘special’ days I quit trying to quantify the loss, but it still hurts. As I read other’s facebook posts about their husbands and fathers and even wrote something to my own dad I realized painting your love with a broad stroke and a few words wouldn’t do. I refuse to romanticize the way you care for us. This kind of long faithfulness is hard and messy work. Last night I searched all the blog entries you wrote on the old Team Danica site and ugly cried my way through them. Your unique voice in all this suffering is necessary and true.

Less than a month ago, on the night of Delaney’s ‘actual’ graduation, you picked up tacos for dinner on your way home from work. Delaney was hurting that day and made the decision she couldn’t physically go to the graduation watch party planned. We all felt a strange grief choking us. When you arrived the girls were grabbing paper plates and napkins and getting glasses for drinks and there was a general sense of rushing to eat. Danica sat on the end of the bench at the table and Delaney pulled out the other end quickly. Danica fell backwards off the bench and hit her head. You lost it. You didn’t curse or yell. Instead, in a pained sarcastic way, you clapped loudly. The incident triggered something in all of us and dinner was over before it began. After we were sure Danica was physically okay Delaney ran to her room and sobbed her heart out. You retreated to the hammock in the back yard feeling awful. You explained how almost every minute of every day you are holding your breath waiting for the accident that breaks Danica’s hardware and fusion again. Most of the time you are able to keep this feeling out of reach but when something like the fall happens your heart is split open for us all to see. I carry this fear too, but I shine it up with faith to make it more bearable. There is something about Delaney’s Chiari diagnosis that’s exposed us in new ways.

The mood stabilizer I take keeps me steady most of the time. Once in awhile I open the flood gates with you. You let me say the same things over and over. I tell you how I don’t think I can embody this pain one more day or continue to watch our girls suffer. You see me and you hear me, and it helps me go on. I wipe my tears, blow my nose and make a plan for the next impossible thing. I go over the appointments, the insurance battles, the money that isn’t there and the bills I’m prioritizing. I talk about the girls and their emotional needs on top of the physical stuff. This is my way of trying to maintain some control in a life that is almost nothing like we thought we wanted it to be.

Somewhere in the midst of our mess, you have this other world to manage too. You leave the house at 4:30 am every day to work. I don’t think you’ve taken a true sick day in over a decade. You have never complained. Our family has always come first and any personal ambition or desire for success has taken a back seat to the need for steady insurance coverage and a schedule that allows you to be there in the afternoons and evening when my spoons are gone. Moving to Arizona to start over with a company that has no understanding of our complicated medical journey has made it even more difficult.

No one really knows the Dan I first met and fell in love with. The Inner Circle award winner. Your life with the trips and recognition. The bonuses and stability. The social network. The friends. Golf. Your luxury car. Your boat. Your motorcycle. Things that made a life outside of what I was to you. I have seen you sacrifice everything down to the most humbling day when I gave you my beautiful diamond solitaire in the red and gold box to sell for bills. The stone you studied and chose. The perfect carat with perfect color and clarity you had worked so hard to pay for and gave me on the beach in Kauai. You brought me the setting back empty, and we both cried. Nothing was sacred in our desperate attempt to stay afloat.

I have never seen or heard or read in a fairy tale or real life about a man who loves like you do. A chronically ill woman once compared her steady husband with you. She said something that shocked me. She said, “Most men would have left women like us.” Here’s the thing. I have never once felt like you would leave me. Your love is that sure. You are a mirror of God’s love. When I can do absolutely nothing to be your help you still cherish me. When the only physical connection we can make is less than a hug because of my pain you sniff my neck deeply and sigh, not out of frustration but as if you are still intoxicated with something only you know resides in this shell. You treat me like a soul. You respect me. You forgive me over and over again for the hard edge I carry most of the time. You are so fierce in your commitment it frightens me, because I still can’t believe it’s possible.

I want to do something huge for you. I want to give you a break. I want to spend a week with just you and feel even a fraction better than I do now so I can give you all my attention. I want you to know friends again and have something to say to anyone besides how hard it is all the time over here. I want you to experience recreation or pleasure without a single shadow overhead. I want to sit in the sun with both our faces burning and feel the exact same release at the exact same time and say together, “This is good.” I want you to feel the escape you loved about riding your motorcycle alone on a spring day in Maryland down an open road lined with flowering pear trees. I want to have a meal with you and not think about what it costs or what in it might make me sick or how long we have before I crash. I want to taste every single ingredient and talk about them and sip the notes in our wine like a symphony and tell the truth in the clear way we used to on special nights alone. I want to be healthy for just one more night so I can make love to you the way I used to, when our bodies and spirits were so melded it was as if you were wearing my skin and I was wearing yours. I want to laugh out loud and not have it catch in my throat like a knife. You always make me laugh. I love how you make me laugh.

So much of your love is about Delaney and Danica too. I don’t know any other man who works all day and comes home to work just as hard. You don’t sit down until you have a load of laundry in and the dishwasher emptied and coffee ready for the next morning. You run the vacuum and ask me what else you could possibly do to make something easier or less painful for me. On nights I know you are starving, you will eat a bowl of cereal without complaining because I just couldn’t make dinner and nights I do cook you tell me how much you appreciate it. “Good job, Monki.” And in those words you are saying so much more because you know how much it hurt to stand and stir and lift and open and shut to make a simple meal. You step in for carpool and shopping and every endless outing moms have to make when I can’t. When I try to go along you have my back and see the look in my face when I’m done. You protect me even from our children on my hardest days. This hurts us both, and I don’t know any other man who is this brave.

I pray for you. I ask God to give you the strength you need to keep doing this impossible thing you have somehow made possible for us. I beg Him to bring you rest or relief or joy of any kind. I thank Him for you so many times every day and every night.

I know we quit looking for the reasons all this happened to us. I know we stopped believing it was punishment for something we did. I know we quit asking almost all the whys and have learned together to take it minute by minute, hour by hour as it comes. I just have to say it over and over. There is no one else who could have stood in the stormy waves this long and not turned and swam to save themselves. You were made for me. You were made to love Delaney and Danica. Every part of your life until our life began made you ready to be the man you are.

Thank you.
Two silly words.

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Dear Delaney…On Chiari and Seeing and Staying with Pain

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LaneyLemon“Finding grace in suffering is less about cognitively assenting to the truth of God’s goodness than about letting our souls and bodies be seen. If you are a sufferer, be seen. If you encounter someone’s suffering, tuck your words of God’s goodness away until you’ve first listened with the eyes of your heart determined not to look away from pain.”-K.J. Ramsey, This Too Shall Last: Finding Grace When Suffering Lingers

My darling girl,

I’ve been writing in a journal to you since before you were born. Many of the entries are full of wisdom I’ve collected through the years and want to make sure I share with you. Most of them begin with the word, “On…”

When you were almost three years old we enrolled you at a Montessori school in Akron, Ohio. I would drop you there on my way to work. It was the first time I’d left you with someone who wasn’t family. Just a few weeks into our new routine I received a phone call from the school. “There’s been an accident. Delaney fell and cut her head. We need you to come right away.” It was a twenty minute drive from my office to the school. You tripped while running and the corner of a cabinet split your forehead wide open. When I rushed into the school I gasped at all the blood. A pediatrician mom told me the head is very vascular and not to worry but to take you to the children’s hospital emergency room right away. Your dad met us at the school and drove us there. I sat in the back seat holding a cold cloth to your wound and tried to keep breathing. When the time came for them to hold you down and place thirteen stitches in your perfect brow I couldn’t watch. I couldn’t hold your hand. I couldn’t tell you it was going to be okay. I began to black out and a nurse took me out of the room to sit on the cold floor with my head between my knees. I sobbed while you screamed. Your dad stayed with you.

Next Saturday you and I will fly to New York alone. You have Chiari and need a brain decompression. But it’s not that “simple.” We aren’t sure if your Chiari is being caused by something else like a leak of cerebral spinal fluid. Sixteen days from now you will be rolled away from me and have something called an ICP bolt placed. It will measure your intracranial pressure for twenty-four hours. Eighteen days from now you will have brain surgery.

One of my biggest fears is that you will wake up and look at me in the terror of post op pain and ask me why I didn’t tell you how hard it is.

I don’t want to take for granted you understand what will happen just because your little sister has been cut three times and we are just calling my surgeries “countless” now. I know the trauma of watching us climb into the car or on a plane and leave you behind all these years has settled into a hum of reality. I also know you have been protected from seeing the worst because we always needed specialized care so far away. By the time we made it home we were hurting but healing. You didn’t hear the screams when our IVs blew and no one could get a new vein. You didn’t see the hours without pain meds while we suffered and waited for IV therapy. You didn’t see the delicate dance with each new shift nurse and resident doctor fighting for the best care while not tipping the scales to crazy. You didn’t experience the dreaded day two, the day after the triumphant Facebook posts about being a warrior, the day when all the anesthesia wears off and we wondered how in the world this hurt could be better than the pain that brought us there. You didn’t see the endless parade of helpers that took our vitals and checked the equipment and cleaned the room and brought the meal tray and took it away along with the nutritionist and pain management doctor and physical and occupational therapist and social worker. You didn’t smell the antiseptic hospital odor that oozed from our pores. You didn’t taste the flush of the IV over and over or feel the tearing of the tape off skin while checking wounds. You didn’t see the desperate need to be released from the hospital just to be anywhere else just so we could finally rest.

Today I explained the process of hospital admission and getting ready. I talked about the questions you will answer over and over again. I discussed the awful moment when they will take you away from me and you will be alone in a freezing cold room with masked faces and cold hands moving you to the operating room table while placing sticky leads all over your chest. My body has become just a container for my soul but you are seventeen and no one has ever touched you like this. You are most worried about the catheter and knowing someone will be in your private places after you are put to sleep. It may be the hardest part. They will ask you your name and birth date one more time and do you have any allergies and what surgery you are there for. You will be scared and so ready for the mask and the gentle voice asking you to take a deep breath and another…

I will fight like hell to be there when you wake up. Because you are a minor and we will be at a children’s hospital they tell me I can. You will be confused and groggy. Your throat will hurt from the intubation and your mouth will be so dry. They will say your name and ask you if you are in any pain. And you will begin to grapple with what’s just happened. You will want to know how the surgery went, how large the incision is and when we can go home. From the moment you wake up you will begin thinking about your own bed, and Dad and Danica and Twix and every hard thing after waking up will be the next hard thing you do to make it there.

You rushed me through all this and began to cry. A Delaney cry. Your little nose quivered like a bunny and a tear slipped down your cheek as you quickly wiped it away and said, “It will be okay, right?.” You reminded me you are in pain every day and this is just something you have to do to move on to the life you want. You asked me while you were telling me. And I wanted to reassure you, but I’m afraid too. I’m most afraid of lying to you about any of it, because that’s not what we do. You and I have always been impeccable with our words to one another, one of the four agreements I raised you on.

It was easier for me to have faith with little Danica. I’d been fighting for her since I first heard her fetal heart beat. Laney, I always believed you were meant to fly away from all this chronic illness and suffering. You were to leave with a hard scrabble story of a character building childhood resting on the foundation of God’s faithfulness and the multitudes of kindness that were miracle to our family. I said a thousand times I was holding you loosely. It turns out I’m clutching you girl. But I know every impossibly hard thing I’ve lived and learned about Chiari has brought me to be your mother right now. I have seen the goodness of God in the land of the living. I’ve seen miracles. And I’m pleading with God for one now.

Laney, I promise you I will not look away even once during these next hard weeks and months. I won’t faint and be ushered away. I will not tell you how good God is to clean up the edges of the suffering. I will write this story exactly as it unfolds with the vulnerability of being seen. I will stay. And God will be there too. Nothing about Him will change. He will watch over us and be faithful and work out His great love for us through the pain.

Please Jesus. In the chaos of pandemic and the necessary and holy work of fighting for justice and change please see us too, a broken mother and a hurting daughter who will be far from home in a strange city fighting demons. Please be with Dan and Danica as they are left here. Comfort them. Protect their minds and hearts. Thank you for the community of love surrounding us as we move forward. Please continue to provide our needs and access to care through the generous hearts of others giving and sharing so many will pray. On Chiari, I’m begging you to lead us in the perfect plan for surgery and bring healing in the multitude of ways we need to make this a success. Help us show that honest suffering will always point to You and inspire hope. Our hope remains. We know this too is Grace. Amen.

(Friends, I’m humbly asking you to please add Delaney’s surgery dates to your calendar. They are Wednesday, June 24th and Friday, June 26th at Columbia-NewYork-Presbyterian, The Morgan Stanley Children’s Hospital. Please share her story and ask your friends and church to pray. Use the hashtag #teamdelaneyjayne. If you want to follow her story and receive updates while we are in New York please follow me on Instagram @MonicaKayeSnyder or through Delaney’s gofundme page at https://www.gofundme.com/f/help-delaney-jayne-overcome-chiari

Thank you for giving and making a way. Thank you for praying when we are weary and cannot find the words. Thank you for encouraging. This is such an incredibly hard and lonely place for all of us. We need our people to see us and stay.

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